Breathing advice

[Mary C]

Hi Jody ,I know Ellie will have given you sound advise.

I really hope you can contact the local hospice or palliative care team ASAP.It’s clear your dad and mom need support right now.
In these situations it’s vital there is good support to relieve symptoms and keep your dad comfortable .
There seems to a vast difference according to where people live regarding good palliative care.
Really hoping your parents don’t have to wait any longer.
Best wishes
Mary

[Lynne K]

Jody, good that you have contact with the breathing team. Yes they ought to be able to set your dad up with a cough assist machine and show whoever goes with him how to use this device and give contact numbers for supplies and support. Good luck, Lynne x

[Ellie]

Jody123 I sent you a PM. xx

[Jody123]

Thank you lynne for your reply. He only speaks to the mnd doctor every 6 months as it’s quite a way for us. He was referred to our local hospital where he has seen the doctor regarding his breathing etc which is where we got the NIV from. Will the nurses here know about the cough assist machine? The community nurse that we called didn’t know of this machine, well she never mentioned it. So is it best to call the nurses that sorted out the NIV about that? Or should I call the hospice?

[Jody123]

Thank you Ellie great advice as always, I think a chest X-ray is a good idea, I’m going to speak to my mum and see what she thinks, we don’t want to worry him as he is very anxious, but I think it would be a good idea.

Thank you for the advice on the NIV too, I did say to her earlier, even if he tried it for an hour in the afternoon. His sats are normally around 94.

Sorry for not being clear about who I was talking about 😂 it’s the community nurse she spoke to. She said there was not anything to help him cough. She is the only one who we get help from, she phones once a month to see how things are, but can call in-between for any other problems like this time. The hospice have never been in contact or if you call they never reply. We don’t really understand their role in this as they haven’t offered any help, what can we expect from them? Do they have nurses and doctors that specialise in this?

[Lynne K]

I agree with Ellie Jody that a cough assist machine ought to be tried by your dad. His MND clinic ought to be able to refer him to an attached breathing team to set him up with this. Have you got their number, or email the clinic specialist nurses. Also an examination of his lungs maybe in A + E but Covid danger if that’s done maybe. So surely his GP can assess if stronger antibiotics are needed. Good luck for your dad getting sorted out and improving. Lynne x

[Ellie]

Jody123 Would your dad be able to go for, or be willing to have a chest X-ray to see if the chest infection is still there? Stronger antibiotics may be needed, which may mean a hospital stay, and not all of us would want that...

Using NIV during the day, even for an hour every few hours, might raise his energy levels enough to convince him to use it during the day, again, not necessarily for the whole day.

88% Sats isn't great, do you know what his level is after a night on NIV?

I don't know who "they" are who your mum has been talking to, but they're not exactly brimming with compassion are they... There is a Cough Assist machine which does what it says on the tin, which may benefit your dad. Is he linked in with a hospice or palliative care team?

Love Ellie.

[Jody123]

Morning, my dad now has no use of any limbs, he can still swallow and talk although his voice has been quite faint, he’s not been him self the last few weeks, very lethargic and sleepy, he got checked over and was prescribed antibiotics for a chest infection but didn’t seem to have improved. Still very sleepy, can’t get into a conversation with him as he just hasn’t got the energy, his sats my mum just said are 88. No temperature. What do you suggest we do? He uses his ventilator at night, I suggested to my mum to get him to use it during the day too but he is reluctant. My mum has called up yesterday asking how to get him to cough, as his cough is so weak but they say there is nothing they can do. Thank you in advance x